Once when I stood up in a public space to reach something, some guy said “Nobody asked me, but it seems to me, you don’t need that fancy chair.” I have often felt that type of a remark from bi-standers. I said, “That’s why nobody asked you!” Let them walk a mile (or 10 steps) in my shoes and I bet they would want some way to get around… Read more

I don’t know about the body not meant to take medications. I take polyethylene glycol (Miralax) daily ever since my large intestine stopped functioning years ago due to my muscular dystrophy. This medication keeps me from needing surgery to connect my intestine to a bag, which is obviously much more invasive. We all often take pain relievers… Read more

OH, ouch! You didn’t say why anybody would set your house on fire, but that is a major crime and should be prosecuted! I’m glad you’re okay and I’m with you (to Hell with the chair and let’s get out of here.) Things are replaceable, our health is not!

Too many times to count! (Of my power chair dying in public.)
I use my equipment hard, no apologies. I am in my chair from when I wake up until I go to sleep. I am active so I am often on the bus or in my van or rolling around downtown, and something is often breaking. Unfortunately these necessities are not reliable, even though we are forced… Read more

Unfortunately doctors are just people, and people come in all sizes, shapes, and flavors! We need to ignore the idiots, be they docs or whatever. Find another doc who listens and is willing to prove himself wrong!

I dislike drawing an imaginary line between “mental” and “physical” health. Our heads are part of our bodies, anything that effects your body effects your brain and visa-versa! When we are sad our bodies hurt and when our bodies hurt we are often sad. Especially with a “neuromuscular” disease, there is no line.

As far as I know Myotonic Dystrophy type 2 (which I also have) is always adult onset. I do however recognize the cardiac defect, which my father who unknowingly had DM2. My father received a demand pacemaker which kept him alive another 25 years. I assume this was sadly not available to Gottfried. I have been monitored, but as yet do not have this defect.

I used to have a “knee jerk” reaction to comedies that react to disabilities negatively. I have grown to actually appreciate them now. I now see how treating everything alike (making fun of everything) actually evens the playing field. If we are all made fun of and everything is made fun of it shows how serious negative treatment of one… Read more

I have always believed that from a scientific point of view that there are many things we do not know. Many of these things are because our sciences don’t know how to read the information yet. That does not mean that they don’t exist, just because they cannot be proven (yet!)

When I can afford it I often spend my “mad money” seeking answers… Read more

Like many others with MD I have trouble swallowing. Fortunately I like hot salsa and digest it well. I smother most anything with tomato sauce or salsa and it goes down fine. My wife complains that everything must taste the same, but I like the taste!

I haven’t run over my wife for a while, because she knows how I drive! Unfortunately we had to give up holding hands while out for a “walk and roll” as we call it. Also unfortunately, even though my service dog is really good at keeping out of my way, I sometimes make an unexpected turn or reverse and run over her toes. I’m glad I got a… Read more

Hot water as in hot tubs, baths, or long showers are the only way I can loosen up without hurting myself! Stretching cold I often pull something that takes forever, (or maybe never to heal). Without hot water I end up curled too!

I would love the idea of being able to ride into an airplane and be strapped down in like I do in cars, but I don’t know what would happen when we get to where ever we are going. We often fly out of the country and if I fly in my chair we have to hire a truck and ramps to keep the chair and I obviously can’t stay in it in the back of some… Read more

I once parked pointing the wrong way on a back street because it was the only space around forward of a driveway where I need to park with my rear entry van. I went to a movie and was back within 2 hours and found a ticket on my car. I appealed in writing on the form included, but was denied. I ended up paying the fine.

I used Numotion for my first paid chair. Their service and the surprise monetary bills were horrendous! I switched to National Seating and Mobility for my current chair. Their service and billing was straight forward and they react quickly when my chair breaks down. Other users and I refer to Numotion as “Nomotion” because it fits! They… Read more

I use a cane seat. When you walk it is a regular cane, but when you want to sit you kick out the two other legs and a small seat comes out. I perch on it when I need to be out on my feet for a bit, (like when I pump gas.) It’s not something I could comfortably sit on for more than 10 minutes or so, but covers the short walks. I have one at… Read more

Thanks Leah, I had not heard of these guys before. Now I will follow them! It seems we all have expertise in navigating our own disease, sharing some of that “hard won” knowledge might keep somebody else’s journey from being so tough.

I had no effect from the shots except for a little arm soreness for a day. Not to make light of some of the severe side effects some have reported, I almost wish I had more of a reaction to now know that I am (mostly anyway) immune!

I just got a grant for (from CAF: Challenged Athletes Fund) and purchased a “Grit Freedom Chair”. It is a manual lever drive chair meant for off road. I had been looking for something to use on relatively flat trails and across the beach to get to the water. I decided against the all-wheel drive power chairs because they are so heavy… Read more

I have a big carabiner on my chair seat belt and I clip a heavy duty re-usable bag onto it and carry everything that way.

I take PEG (Polyethylene Glycol) daily, the common brand name is Miralax. My colon shut down completely last year due to my muscular dystrophy and I had to be hospitalized to clear it out. The Docs there said if it continued they would have to carve out a new anus (which didn’t sound like much fun!). Since then I’ve taken PEG daily and have had… Read more

Hello Susan,

Check to see if your husband was checked for Myotonic Dystrophy type 2. Type 1 is very common, so is often tested for, but type 2 (which I have) is on a different chromosome, which is often overlooked. The state of modern medicine is that they have to test for every specific thing. There is no wholistic genetic screening to… Read more

My sister who has MD2 like me, spends most of the time walking with arm crutches. She has fallen and broken bones in both hands too many times to count. She has also had countless surgeries to put them back together again with varying degrees of success. Somehow our bones don’t heal well or sometimes not at all. With one or the other hand in… Read more

I like being a nice guy too, but when somebody is rude to me I try to send it back! They can’t complain that I’m rude when they said the same to me. Most people kind of “guffa” and then rephrase it and I will explain. I like the opportunity to educate people, I see that as part of our job.

I like to respond to the “What’s wrong with you?” question by responding: “Nothing! What’s wrong with you?” Then they get to feel how that question feels and if they are not too put off they rephrase the question.

This is a topic I love and I’ve already shared a lot about the freedom my wheels give me. So many people get stuck in the sad end of being “wheelchair bound”, but it’s not like that at all! I deferred the decision to get a power chair for years for all the typical reasons, but when I finally fell into one and found out how much freedom and… Read more

I agree, “everyone’s difficulties are valid!” We all get judged at times by people who don’t think we are disabled enough to require accommodation. Sometimes I’ve even been judged “not disabled enough” by other disabled people. We all have to fight our own battles within ourselves about accepting our own disabilities.

Before I was in a… Read more

I drive a rear entry Honda van. I paid $25,000 for it 3 years ago when it was 10 years old. I put stickers and signs on the ramp that I bought at a safety equipment store. In parking lots the rear entry is easy and I can park anywhere. When I park on the street I try to find a place at the back of a line of cars so I can’t be blocked. I have… Read more

I didn’t watch the show, but the change in attitudes and health care can only get better with the new administration. We have to wait and see what gets accomplished.

As much as I have lived these past 10-15 years in a mobility device, I still have accidents. It seems impossible to avoid damaging a doorway or hall. We spent a lot of money fixing up our house from the last mobility device resident, and it pains me to see myself damage it again. It hurts even worse when it is somebody else’s house!

Yet I… Read more

I have been reminded in this crazy year the value of simple pleasures.

To see somebody up close in the flesh.

To give and get a hug from a close friend.

To see a smile on a stranger’s face when you say something nice.

To visit a friend and not have to talk to share meaning.

These are all things that I have missed this year and I hope I… Read more

I agree that there should be no shame, for anybody disabled or not. The whole “oldest profession” should be legalized and cleaned up. This would put a handle on disease prevention and sex trafficking. It’s another one of those things that many do, but few admit!

Dani, sorry to hear about your surgery. Although we should be glad because the surgery is supposed to help? Anyway, we all know digestive issues are the pits and what most folks who have them say is the worst part of their condition, myself included. But, as Leah said, we know you’ll get through this and return to your “normal” life! Stay… Read more

I have rarely been a “Barstuck’s” customer as I much prefer to give my money to any small local competitor. I don’t understand the straw issue. I use a metal straw repeatedly. They sell them at “Wallyworld” and they are cheap and easy to rinse out and easy to carry. They come in a variety of thickness and bends.

I think we all worked against being “wheelchair bound” until we changed our attitude from the “ableist”. I too feel empowered by my wheels, not restricted. Walking isn’t so important, being there is!

Nobody likes to be a burden, but I remember in my past life of being a temporarily able bodied person, how easy it was to hold the door for someone or help them find where they were going. I remember how good it felt to take a little time to help someone out. I don’t want my hangup about being a “burden” to keep anybody from feeling that!

I had to go to the emergency room at the end of March for some severe gastric problems. They wouldn’t let my service dog or my wife even through the door. The procedure took several hours and I was unable to call anyone to let them know until they discharged me. I understand this was early in the pandemic, but communication was totally… Read more

I have often heard that with anxiety as well as pain you were supposed to get “into” it to feel it fully to try to understand it. While that may be useful to comprehend things on a deeper level, it has never worked well for me. I just try to keep busy and avoid concentrating on the pain or anxiety! When I’m busy, I forget my pain and worries… Read more

I would want something like yours’. They actually make a chair with tracks and wheels that can even go up and down stairs. Unfortunately they are European and not medicare approved so you have to buy a ridiculously overpriced chair with cash and there’s nobody around who could repair it or even get parts. Also these chairs compromise speed… Read more

Choking is a major problem with my disease (Myotonic type 2). My sister who also had this, died choking on a spoonful of peanut butter. So, I am always trying to slow down my eating and coat everything with enough liquid to lubricate it’s passage. I still choke frequently, sometimes without eating. So far it has never reached the point to where… Read more

My first insurance covered chair was with Numotion. Service was awful and customer care disappeared as soon as I signed up to buy it. Many of my disabled friends had the same experience, so much so that we got to calling them “Nomotion”! My newest chair is through National Seating. Although far from problem free, they really make an effort to… Read more

Years ago I was being fitted with orthotics for my toe or foot drop. I realized once I got the brace on that I couldn’t drive with it because it wouldn’t allow me to extend my toes and I would have to lift my whole foot up to work the accelerator. Since then I realized that I would be much more mobile and safer if I gave up walking all… Read more

Swimming has been my “go to” exercise since I figured out that it worked 20 years ago. Unfortunately, my local health club pool of course was closed for 3 months and just now opened for swimming and water workouts on a limited basis. I haven’t ventured back in yet and am waiting to see how well other members stay healthy. I hope to get back in… Read more

I know that everybody is different, but for me with my type of muscular dystrophy (myotonic type 2) my muscles fell better the hotter they get. I go out and get my exercise in the heat of the day, sweating like crazy! My service dog however, doesn’t like the heat so I move my activities where she has to run with me to the mornings.

I have a service dog who helps me up when I fall and I can lean on her when I have to walk. However, it’s the emotional support that keeps us bonded and she can always make me laugh!